Breast Cancer Advocacy Rises in Kosovo

By Cyrille Cartier

WeNews correspondent

Sunday, April 8, 2007

As Kosovo hotly debates its political future many women with breast cancer here say they are getting fed up. They want to draw more public attention to substandard treatments and facilities, widespread ignorance, corruption and cultural stigma.

Subhead:

As Kosovo hotly debates its political future many women with breast cancer here say they are getting fed up. They want to draw more public attention to substandard treatments and facilities, widespread ignorance, corruption and cultural stigma.

Byline:

Cyrille Cartier

PRISTINA, Kosovo (WOMENSENEWS)--Three years ago Nafije Latifi touched a lump in her breast. But she didn't rush to the hospital. She knew they had limited services.

When she did go to Kosovo's main public hospital a week later, she could not even get a mammogram; the machine did not work. So she went to an expensive private clinic to have the mammogram and then returned to the public hospital--where services are less expensive and sometimes free--to have a doctor there read it. She had breast cancer.

"You have a problem and you must be operated," she says the doctor told her. When she insisted on asking about the size and status of the cancer he brushed her off. "When we open (during surgery) we will see and tell you later."

Latifi, 57, decided to look for a different doctor.

With the help of her family she became a health migrant and traveled to Germany for surgery. Her cancer went into remission until 2005. Costs at that point were too high for her to leave Kosovo so she had another surgery in Pristina. She then started a daily commute for five weeks to neighboring Macedonia for radiation therapy, unavailable at home.

Latifi often smiles as she tells her story, but then a shadow passes over her face. "What will happen to another woman who doesn't have the conditions and support I have?"

Since the war in 1998 and 1999 between Albanians, who make up 90 percent of the population, and Serbs, the United Nations and other international bodies have governed Serbia's southern province of Kosovo.

A U.N. proposal to finalize Kosovo's status stipulates supervised independence with protection and empowerment of its Serbian population. It is largely supported by Albanians but rejected by Belgrade, the Serbian capital. The U.N. Security Council began closed-door talks April 3 although there is no set date to vote on the proposal.

But many women like Latifi are tired of the cacophony of politics in far-away corridors of power and endless discussions in the streets.

"Politics, politics is always the main topic," sighs Latifi. "Even primary school students are talking about politics . . . We have to wait in queue for health to be the main topic of discussion."

Support Springs to Life

She and her friend Vera Lumi-Shala, a uterine cancer survivor, last year founded a support-group organization called Jeta-Vita, the Albanian and Latin words for "life." It is the first of its kind in Kosovo.

No one knows how many people have cancer in Kosovo. But even though there is no central cancer registry, many doctors and activists say it is widespread.

In European Union countries, breast cancer affects 1 in 10 women and is the second leading cause of death in all women. In Kosovo, the situation is probably worse. Most women go to the doctor in late stages of the disease when treatment is more expensive and difficult, says Avdyl Krasniqi.

Krasniqi was part of a team of doctors who conducted a retrospective study to measure the incidences of cancer over five years.

"Breast cancer is the most frequent single-organ cancer in Kosovo from 1999 to 2004," he says. Lack of funding, however, meant they could do little beyond establishing that there is an upward trend.

Igballe Rogova, director of Kosovo Women's Network, a coalition of organizations in the area, says the government is remiss in promoting awareness and finishing an oncology institute it started a few years ago.

"I'm so upset with my government," Rogova says. "Every person in government has to have a Jeep at a time when women are dying. We need health care, not Jeeps."

Rogova, Latifi and Lumi-Shala have circulated a petition urging the government to devise a national plan to fight the disease and finish the oncology institute.

They also launched a local TV public service announcement that ran in March encouraging women to perform self-examinations and go to the doctor sooner than later. Now they are struggling to get funding to produce more ads.

No Equipment, No Care

"In the West because they diagnose early and they have good conditions, they are saved. But in Kosovo there's no equipment, no care for this," Rogova says.

Filmmaker Neta Kastrati, her sister, camerawoman Sevdije Kastrati, and gender studies lecturer Linda Gusia made the public service announcement. They say they had to change some of the plans for the airings. Stations, for instance, refused to allow a picture of a woman without breasts.

Widespread stigma, prejudice and ignorance aggravate the life of women with breast cancer, they say.

Some are afraid of surgery. Others can't grasp that they have a serious illness when everything feels and looks normal. To others it is embarrassing.

"They feel ashamed to say they are sick and to talk about their illness," says breast cancer survivor Latifi.

The Kastrati sisters' aunt was diagnosed with breast cancer before they began filming the announcement. Even after surgery, their aunt's immediate family will not utter the "C" word in front of her and pretends there was a misdiagnosis.

People here don't talk about it, says Neta Kastrati. "They talk about it if they die. Not during treatment or recovery."

"Women's health is last on the list of anybody's concerns," Gusia says. "If you have little money you go somewhere else. All my friends go to Macedonia for the gynecologist because it's more humane treatment."

Limited Options

If a woman gets a screening--as the announcement recommends--her options are still limited.

If she has enough money she can turn to some expensive private clinics or, like Latifi, she can go abroad. But women with enough money are scarce in Kosovo, where a third of its 2 million people are under the age of 14 and unemployment reaches 60 percent. The cost of a thorough breast exam in a private clinic is 150 euros, an average month's pay.

Until last year, the mammogram machine in the main hospital was broken. One doctor says there are only three reliable machines in all of Kosovo.

In the public hospitals women might have to wait weeks or months for biopsy results or an operation, says Fisnik Kurshumliu who just finished a four-year pathology residency in a public hospital in Kosovo.

"You need to find a connection to be admitted in hospital and of course you have to bribe nurses and doctors or someone in the administration for admittance or even an operation," he says.

Latifi and Lumi-Shala want their organization to be a place where women can come together to exchange stories, information and comfort. For now it is just an office and the two founders work without pay to keep it afloat.

Since the launch of their campaign they are busy giving local media interviews and hope more women will contact them. But they know most of them will ask for something they cannot offer: help in paying for treatment.

Journalist Cyrille Cartier worked for Reuters in Washington, D.C., and as a freelancer in Iraq for two years before moving to Croatia to cover issues in Southeastern Europe.